“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

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Why I almost didn’t paint.

This is one of those subjects that I have gone back and forth on whether to be public about. On the one hand, it’s a big part of my life. On the other hand, after so much unexpected media scrutiny, privacy is vital to have in at least some areas. But after believing myself alone in this regard for so long and then finding out it’s more common than I thought, it seems like one more thing that trips the switch in my head that goes “You know what, if one of your goals in writing is to show others they’re not alone in the same way others have done for you, then you may want to think about writing this.”

So… okay. I was absolutely sure as a kid that I sucked at art. Painting in particular but also art in general. I was usually one of the slowest kids in art class (where we had to exactly reproduce someone else’s technique and subject matter) and in one of my art classes it was worse than that.

The art teacher made us paint things she had already painted in exactly the same way she had done it. And aside from being crappy at that kind of art in general, I was incredibly crappy with paintbrushes. The art teacher got so frustrated with me that she would paint my paintings for me and pass them off as my own. My parents would ooh and aah and I would be mortified. It took me a long time to figure out words for what was happening to me and even longer to overcome my terror of that teacher. She was always treating me like I was completely stupid and if she was yelling at anyone it was me for screwing up another painting or sitting around stimming on the paintbrushes (“AMANDA BAGGS WEREN’T YOU LISTENING I JUST TOLD THE CLASS YOU CAN GET LEAD POISONING THAT WAY PUT THAT DOWN THIS INSTANT!”).

The rule was you started with landscapes. If you were good at those you could do flowers. If you were good at those you could do animals (we were told we had to paint every single hair). If you were good at animals you could do humans (every single hair too). And original paintings were not okay. I wanted to paint cats and I was terrible with a paintbrush. I very much did not fit into this arrangement.

So I took to hiding in the bathroom, a strategy I had already perfected out of overload. I would pull every paper towel out of the paper towel dispenser, pull all the soap out of the soap dispenser, then play with the soap for awhile. When I was done with that I would lock the door behind me on my way out, which for some reason I found very interesting as a concept.

One day the art teacher told us that it was criminal to lock doors in this manner and that she could call the police. She said that she knew exactly who was doing this and would talk to them after class. But she never talked to me and she never called the cops. I kept locking the doors.

Anyway with that and copious other similar experiences in art class, I was absolutely convinced I could not paint. I did one crappy painting (using brushes) after that and it only confirmed to me that I was a terrible artist and an even worse painter.

For the three months when I was in high school, I had lost even my previous thin pretence of not stimming on stuff. (I was not a stiff formal autie, I was a chase after dust particles and stare at moving colored objects autie. More on that in another post, but suffice to say I was more like Luna Lovegood than Ernie Macmillan.) After I backed into a corner screaming when a math teacher changed a routine on me, he threw me out of class and publicly accused me of drug abuse. An art teacher brought me into her class instead and told me, “I don’t care if you move around or behave strangely. I don’t care if you sit under the tables. All I care about is that you produce art.” So I would go into her nearly empty classroom, sit under the table, and draw. I was more comfortable than any previous art class but I still knew I wasn’t like the other art students. I received no instruction at all.

Next year I was in college way too early considering my level of overload. Because of that (good) teacher I chose mostly art classes and did okay in them. (The most painting they required was filling in the lines of something, and I could mostly do that.) After that I did a few attempts at crappy paintings with brushes in some of the art programs I was in within the psych system over the next several years after my spectacular burnout. But again it was too much somebody else guiding me.

After I got out of all that and ended up on my own in adulthood, I basically considered myself terrible at art and even worse at painting. All of the encouragement I got was too little too late to get that one terrrible teacher’s voice out of my head. Plus, whenever I dared think of myself as an artist, there was always someone else who took that role, and for some reason in people’s heads there could only be one person who was The Creative One in any group. For instance in special ed (after my attempt at college — I’m the only person I know who this happened to in that order), there was a boy who was The One Artist in our class. He got to participate in a program for disabled artists. I got nothing. Repeated situations like that convinced me even more that I didn’t have what it took to paint.

By the time I started getting these ideas in my head that maybe, just maybe, if I decided to paint on my own terms rather than the terms of others, then things would work better… it was three or four years ago and I was already getting more attention than I wanted for my writing and videos online. I felt like the world was a big eyeball and it was pointed straight at me — exaggerated, but I hate that feeling. The absolute last thing I wanted to be was “an autistic artist” instead of an artist (something similar happened in my teens with a local newspaper and some of my crappiest art), or to have the world confirm to me that I was terrible and stupid for even trying.

So quietly in private, telling only one person, I began to paint. I used acrylics. I painted with my fingers. I painted lots of things but mostly I painted cats and very abstract scenes. And when I dared to show a few more people, they liked it. Not because an autistic person did it but because they liked it.

Still I was terrified to let anyone find out I did anything, you know, (horrors) creative. Because I’m not creative, that’s what other people are.

But the other night, I told someone about the music teacher who chastised me for playing the wrong chords and convinced me I couldn’t be musically creative until I learned chord theory. (I am very easily intimidated when the charge is that everyone else is better than me at something because they can do something I can’t. And I can’t do chord theory.)

And the other person, who knows more about that teacher than I mentioned here, told me he sounded like the kind of teacher who believes music is more about technique than about passion and creativity, and who themselves hasn’t succeeded because they lack passion and creativity, and who therefore has a chip on their shoulder and tries to stomp into the ground anyone who shows more passion and creativity than orthodox technique. She told me if John Cage had tried as a child some of the piano stuff he did as an adult, he’d have been grounded for weeks and never allowed near a piano.

So I got a little bit braver and told her about the art teacher from hell. She told me it was the exact same type of person and that such people single out someone who wants to do something out of bounds, and proceed to treat them like crap. And that my troubles getting paintbrushes to do what I wanted would have only made it easier to do that.

She also told me that my fear of scrutiny was understandable, but that if I let it control me I would be as bad as the people who do whatever they think will get them the most scrutiny and attention. Because either way you’re letting other people control you. And that makes sense, this is a particular area I have a lot more cowardice in than shows openly — I hate being singled out for attention and once you’ve had CNN and Wired and the CBC in your home, that’s enough attention to leave me shaking in a corner when they leave. I only ever agreed because someone pointed out it would also bring attention to the self-advocacy movements and that I shouldn’t let my fears control me. And I’m good at pushing myself to do something terrifying and only freaking out afterward. (After CNN left I barely ate for weeks.)

So I guess this is my declaration that I’m an artist, not just an autist, and have been doing my own thing in this regard for years once I got the idea in my head that it might be permissible for me to produce art of my own kind, in my own technique, and in my own way.

I don’t know why I’m so easily cowed by people telling me that I’m no good at something, that I’m downright stupid, and that my lack of ability in one particular area means that not only shouldn’t I (paint/write music/etc) but that I shouldn’t even try. (See Why I never expect to be right.) But I am. I’m also intimidated in situations where I’m in a group of people and only one person there is called The Artistic One, The Musical One, The Creative One. I once even saw that happen where one girl was called The Musical One even though there were five other musicians in the room, one of whom had been paid for it. But even knowing it was illogical, it still made me feel like I had no right to call myself a musician, or an artist, or whatever. Combine the two plus fear of being singled out and I do it all hiding in a corner somewhere and then wig out every time I have to tell someone.

So I’m not only happy that those teachers were full of crap, but also somewhat mourning the fact that I spent over a decade too scared to defy these people that I thought immeasurably above me. Only to find out they were just people acting out their own insecurities on me. I’ve been told art and music teachers do this to people all the time, and here I thought it was just me.

The thing is, though, that creativity feels like this force inside of me that needs to have some kind of outlet or it will burn me to a crisp. But I’d been making do with writing. And even though I was writing, I’d still feel like there was this white-hot thing inside of me trying to force my body to let it do something, anything other than just sit there. And writing and painting and music all still feel like something doing me instead of me doing something, and like my consent is only a formality on the way to these things happening.

Oh, and last year someone said they’d like me to do a painting for them and that they’d pay for the materials. I wanted both to paint something and to create something that would be interesting to sit around looking closely at. So here it is. The photograph is really bad because of the flash.

Could anyone summarize this? I’m really bad at summarizing things, all I can say is it’s three cats on a glittery and somewhat busy background with objects stuck to it.

Edited to add. Littlewolf has written a really good summary in comments, read that and my comment after hers if you can’t see the picture.